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Wednesday, August 23, 2006

I have been working on another post but haven't had time to finish it. In the meantime, I want to share a pleasant experience with you.

After Billy Ray's Dad passed away we were alone for a year and a half. We used to have "dates with Mom" where we would just go out for dinner or some place. It was generally fun for us.

The past couple of months Billy Ray started refusing to do some of his activities first with support staff and there has even been some reluctance with us. He had meals on wheels which Larry, his stepfather assisted with today. He was a bit hesitant to go for some reason. I finally asked him if he wanted to have a date with Mom when he came back and he was eager. He quickly decided to change clothes and go with Dad for his meals on wheels. Larry said he hugged several of the older ladies on the route and was quick to show Dad which house to turn to. Larry made a big deal of him needing to show him where to go and BR loved it.

When they came back I gave him his Nexum and stalled so he'd have it 30 minutes before eating and then we went to the Mexican restaurant here in LaPine. They are good to him and he loves the food. I don't know when I have seen him eat so well. He was calm the whole time and you could tell he was really enjoying himself. The old charm was definitely present in him. He even engaged in a bit of lunchtime chit chat which is rare for him.

On the way back, I was remembering something one of my granddaughters said and told Billy Ray this little story. One of our daughters-in-law, Rebecca and granddaughters, Eldora and Alena and I were at the mall shopping and eating. Alena said "I like hanging with your Grandma". I told Billy Ray that our pleasant lunch today made me think of that because I like hanging with him. He got the biggest grin and laughed out loud.

We had so much fun we decided to go to the LaPine Inn tomorrow for lunch. Maybe we will let Dad join us if he is lucky (smile).

Saturday, August 19, 2006

I was trying to catch up on some of the blogs I read last night. I can really identify with Tina’s post that everytime someone asks her to go somewhere she has to first think of how K.C. will react. It takes planning for every activity that we have to do with our kids to avoid triggers that cause difficult behavior or meltdowns.

I was thinking about how much I have learned over the years to just anticipate Billy Ray’s reaction to different stimuli and situations. Sometimes it is second nature now and I don’t always think to share it with family and staff.

That’s why we started creating our own little community so others would get to know Billy Ray as a person and understand what he needs to be comfortable. We also became aware rather quickly of the places that we could avoid. As in Tina’s post they had problems in the MacDonald’s drive through. We discovered that there are lots of MacDonald’s and service is not uniform. Sometimes it is better to drive past the closest one if another one has better service – can be easier on everyone’s nerves.

“An important part of preparation is your choice of store. For example, if your child is really into a specific item and you know that one store will have that item prominently displayed in so many locations you can’t possibly avoid it, choose a store that has fewer problem areas. A moderate-size store may have fewer problem areas for your child. It might be more expensive, but if your child is less likely to go into a behavior and you are less likely to compromise with him to get him out of the store, it might be cost effective. If your child is small enough, you can pick him up to leave, this might be less of an issue than a teenager who throws himself on the floor because he can’t understand why you won’t buy him everything he wants."

Wednesday, August 16, 2006

Billy Ray is gradually get back to normal after his sinus and ear problems and adjustment to his support staff leaving. Today he went with his stepfather and our consultant friend, Keddie Wanless, who trained Larry for the meals on wheels route. They are going to do it together. Dad and Billy Ray both seemed to enjoy it.

Recently Brice Stanley, his PA-C, said that Billy Ray could pretty go back on a general diet with a very low dose of his diabetes medication. I think that must be helping his stomach pain because he is needing less and less pain medication.

Overall, it was a good day. We are adjusting pretty well to working around Billy Ray’s schedule and having him do some of the things we have to do too. We are doing extra laundry, which Billy Ray especially enjoys because I am getting things ready for a garage sale at the church. We have not any episodes of agitation for days so he must be comfortable with the changes.

In looking at his journal tonight, I noticed that even though he hasn’t needed extra medication for agitation, his tolerance is increasing. For example, yesterday the television in the living room acted up and it took Larry a while to figure out the problem and fix it. Billy Ray just went with the flow and no agitation. That probably would have been very different even a few weeks ago.

We seem to be getting smoke from the forest fires here in Oregon even though we are quite a ways from it. Billy Ray and I are both sneezing. Apparently, many people are getting sick from the air.

Tuesday, August 15, 2006

I feel a bit out of touch with all of you. We haven’t shared much lately nor had a chance to read many of your blogs. It is definitely time to catch up.

As you know our support staff quit almost two weeks ago. Whether it is the end of an extraordinary great relationship for Billy Ray or one that didn’t work well there is always an adjustment period when you lose a staff. You wonder if it is worth going through it again because of the loss for Billy Ray, time involved in training, the inconsistency that always occurs at least at first which adds to BR’s agitation, various employee-employer issues, etc., etc.

“With all this to consider, you may wonder whether it is worth it. I have been there many times. The reality is that if your child requires one-on-one supervision, sometimes on a twenty-four-hour basis, and her care is exhausting, you need help. You can only live sleep deprived for so long. Your marriage could be damaged by an inability to communicate with each other. If you have other children, you may not be able to meet their needs without help with your complex child. It is difficult to take care of your own medical and dental needs let alone get a haircut occasionally without help. You can work through the difficulty of having in-home staff if you stay on top of the major issues, preventing as many problems as possible before they occur. Be clear about expectations from the initial interview.” (1)

Situations have changed a bit since I wrote that. With the difficulty finding in-home staff, many times you work around their availability. For example, a prior staff had her daughter in a private school and could not start her day here until she transported her daughter. She also needed to be off right on time. It seemed a reasonable request so we accommodated the schedule but it had impact on the Billy Ray’s schedule as well as family appointments, etc.

Many people who do this type of work make very little money so time off is problematic for them. If they are not able to go with you because of their own family needs, it is a financial problem for them if we wanted go to visit family for a few days or we wanted to take Billy Ray to one of my events. We took Billy Ray to one of my conferences early last summer. The then employee was a single mother who struggled to provide a private education for her daughter. She missed a day and a half of work because of it and I felt guilty the whole time we were away.

In my book, I suggested “If your family can endure it, I recommend you work on getting your child more focused and at least started on a comfortable schedule before getting more help. If you bring in outside help who are unfamiliar with your child, they may not maintain the routine you are trying to get your child you used to. That can disrupt the process for a while.” (1)

In a sense, I didn’t follow my own advice. Last summer Billy Ray had just gotten out of the hospital from the crisis summarized here and referenced various other places, still very sick when we hired our last staff. The entire family had come through a very traumatic experience. It has been necessary to make changes in routines and procedures periodically because of Billy Ray’s experience. That is difficult for Billy Ray and for staff as well as family at times.

I still feel Support Staff are a Valuable Resource. However, hindsight is 20-20, it might have been better to regroup with Billy Ray than to start a new staff right away. Thus, we are going to take our time and think things through before starting that.

Additionally, Billy Ray is going to have surgery for his GERD (acid reflex) next month. He is finally physically stable enough that we can go forward with that. This should reduce his abdominal pain considerably.

Once he has recovered from that we can get him on schedule before we decide how much help would work for our family. Sequence is important to Billy Ray as discussed here. It will be easier to get him established in his sequence and then train staff instead of having to retrain them when he is more physically ready to restart his schedule.

Tuesday, August 08, 2006

It is a little crazy around our house. We no longer have an in-home support person since last Thursday. I'm not going to elaborate except to say there is always an adjustment when there is a change. Actually we are doing pretty well at readjusting.

I put a new visual up today on my main website Going to the Clinic if you are interested. It is the update since we moved from Portland to LaPine. It is just took me a while to get it posted.

I just finished an article for the PTA magazine, not sure when it will come out. Club Mom has more of my articles up. I am doing more articles while I am in with Billy Ray while he goes to sleep at night. That's how I got my book written so I'm used to working around his schedule.

I will try to get more regular with my blog again but I will probably be doing it at night after Billy Ray goes to sleep instead of first thing in the morning when support staff used to arrive.

Saturday, August 05, 2006

I thrive from entertaining. It does not need to be glamorous parties. It can be a couple of friends over for a simple dinner. Billy Ray shares that love of entertaining and we have done it together since he was little. I wrote about it regarding the holidays here but it is the same principal of adapting and communicating.

Last Wednesday night we were honored by having Billy Ray’s primary medical provider Brice Stanley and his wife Michelle, Angie Enos who is the Physician’s Assistant who backs up Brice for Billy Ray when he is away, and a medical student who is thinking of doing a study on Billy Ray for his thesis as our guests. I thought it would be good for all to see Billy Ray in his own environment. BR loved it.

Billy Ray and I made the punch together. When we saw Brice and Michelle pull up I supported Billy Ray in opening the door and saying welcome. He bloomed with joy. Then we cued him to use contact to ask each if they wanted punch. Instead of repeating the cue he said “yes” but they got the idea. Together we filled punch glasses half full so that he could carry them and he delivered each with pride. Billy Ray was proud to show his room to his “Dr. Brice” and clearly enjoyed sitting next to him at the table (I was on the other side, cutting meat, etc.).

I wish that I had taken pictures. The thought occurred to me but I thought that maybe Brice might not want to advertise his visit since he clearly can’t go to every patient’s house. Later he said it was fine to share and that he had enjoyed it a lot too.

There is no time that Billy Ray and I work together as well as when we have the common goal of preparing for company. He has that social bug just as much as I do. During the time between the death of Billy Ray’s Dad and our remarriage to Larry, Billy Ray and I entertained frequently. There is something about it that energizes both of us to go on with our day to day routine.

There is so much that he can do. It is motivating to him to control his habits (such as putting his fingers in his mouth while putting clean dishes on the table). We actually only have to stop and rewash his hands only a few times when cooking and setting the table.

We have not entertained much in the past couple of years because of Billy Ray’s illness, moving, my book, etc., etc. but it was so revitalizing to do it this week, we are motivating to try again soon.